im a 17 year old girl, i was diagnosed with glandular fever in december this year, had servere tonsillitus, and was later diagnosed with 'Gilberts syndrome' in the space of 3 months.
My aunt suffers really badly with chronic fatigue (M.E)and i dont want to end up the same! we phone and give each other support but it feels useless and a bit embarrasing for me. I do what normal teenagers do (going out with friends and boyfriend) but i am always falling asleep i get so tired and i hide how i feel, it took me till june to admit that i am ill, i still have glandular fever.
i just dont know what to do, i know that there are people worse off then me, but to be honest im scared, i want to be normal and what makes it worse it all happened when i was doing my first exams in college for As level this year, my results have struggled and i find things hard any way. is it serious bad luck or is there more i can do, build up drinks can only get me so far.please if any one can give ne some help bearing in mind it has to work with gl'fever and gilberts, (also now prone to headaches,tonsillitus,sickness, and serious tired ness, also itchyness)My immune system is very low i need to know what i can do!.
I got sick when I was 15. I had to drop the rest of the school year, and I was pretty much home-bound for a good 9-10 months. I built up endurance slowly--walking my dogs at the local dog park. When I went back to school my junior year, it was really rough. I didn't have the energy, and everyone had suggested I only do half-days, but I refused and did the full days anyways (though I had to take concerta just to get through them and actually retain anything I learned in class, or was supposed to learn).
Unfortunately, just going to school and doing school work was the extent of my energy. I came home, I was comatose for a few hours, I did homework, and I went to bed. When my senior year rolled around, I had a lot more endurance (I could walk 2 miles at the dog park without regretting it the next day), so I thought it would be great.
I relapsed three weeks into the year, and missed the rest of the semester, though I did work from home and managed to salvage almost all of my classes. I relapsed again second semester, but I made it through.
All I can say is, don't overwork yourself. Maybe going out with friends all the time is too much for your body to handle. The first thing I had to do was learn my limits--if I learned how far I could go without going TOO far and making myself sick, it was a lot easier to build up strength.
The second relapse was because I WAS overworking myself--I was really behind in school work, so I was getting 3 hours of sleep a night and doing work constantly. I know it's hard, but you really have to listen to your body. No matter how much you want to stay out for another hour, or go out when you're already tired, it's just not worth it.
I'm 18 now, and I get where you're coming from. It's hard to be young and have this. It's hard to watch your friends do the simplest things, have so much endurance, and not ever have to worry about overstepping their bounds. It took me a long time to accept that this is me, now, but I did. It's easier once you do. And once it's better under control, you can have more flexibility in your life again.
So take it easy--this isn't one of those situations where, if you push yourself, you'll come out on top. If you push yourself, you fall behind. So learn your limits, don't take it too far. I'm not going to say that the grief really ever goes away--I still get upset when I can't remember what it felt like not to be sick--but it gets easier.
Thank you i will try, as you say pushing doesn't get you any where and being a prone worrier doesn't help much. I did the same.. working on college work from 7 in the mornin till 3/4 the next, my boyfriend warned me that it would make me worse and it did!
I do need to find my boundaries.. thank you, and i hope you are ok too
I'm 23, I've had ME/CFS since 2000 with periods of good health in between followed by relapses.
It's not fair that this has happened to you. However I do think that it is very important to stay positive, instead of thinking 'I don't want to end up like my aunt' you have to know you won't end up like her. I know that however ill I am I will recover and, if not 100% I can get over it to a point where I can live my life. I also know that it won't happen if I sit around and wait for it, I have to work.
Right now I am doing pacing, people scoff at it but I think it helps. It involves limited exercise, walking maybe 10mins per day and working up slowly, regular gentle stretching (yoga can be good). It is obviously very important that you don't push yourself too hard but you must put all your effort into it and really go for it (DON'T OVERDO IT). The other important part of pacing is regular rest. The idea is every time you do ANYTHING you rest after. Watching TV does not count as rest. Then you can work out how much rest you need for each activity and start to get some routine.
I think that if you throw yourself and all the (limited) energy that you have into something then that takes up most of your attention, helps keep your mind positive and makes the whole experience a bit more bearable. My philosophy is '**** happens' not exactly original but true. This is bad luck that it's happened to you but it has. To take the best out of it just be as strong and brave as you can and hopefully you'll come out the other end a stronger person and having learned a lot. If you want any info about anything please ask, am happy to help if I can. H